2000
| December 12, 2000 The doctors are trying to put more drugs down our throats. Actually down my younger son's throat. Stimulants. Antidepressants. Because when he really came to (about 20 days after the onslaught of Spinal Meningitis) he went to sit up - and of course could not. And he looked down at a condom cath and a diaper and wanted them off. He was horrified. (Wouldn't you be? Healthy reaction if you ask me!) And of course they couldn't be off - not yet. And he looked stunned - he looked at me and said, "What happened? I could sit up!" I had been telling him exactly what happened for the whole week he was "conscious". When he was awake but not quite himself. It took 10 days for him to be really all there. For this to register. His eyes still jump. It took a week to get him off the condom cath. He couldn't hold anything with his hands. One must hold the urinal. And aim. The diaper is the next target. But before that he must walk. It has now been 30 days. He can sit up for 30-45 minutes on the side of the bed. He can stand with aid for 1 minute 10 seconds. Today he is keeping down water. Most of it anyway. We will try, yet again, to move him to clears - broth, Jell-O and juice. Clear juices. He throws up a lot. We have at least stopped throwing up green bile. He has drugs for that. And drugs to stop the reaction he has to that drug. And another drug to stop the nausea. He has 24-hour IV feeding and drugs to help his reaction to that. He gets fungal medication (again - as a precaution) three times a week at midnight and Demerol to help with the reaction to that. And Benadryl before. And Tylenol. And he gets shots once a week in his legs (chemo). And medication for that. And we are watching the blood levels so chemo can restart yet again (we are at week 12 of 104 so far with all the delays). We haven't even reached radiation (21st week). He can be lifted to the wheelchair and rolled around for 20-30 minutes and then lifted back. The nurses dropped him. Hurt his knee. Went all the way to the floor. So I lift him now. By myself. (I will be 60 years old in 13 months.) I let them guide his fanny since with my arms tightly wrapped around my 6'3" tall son I can't see where I am aiming him. I missed a little today - he sat sideways in the chair. Had to scooch around a bit. My arms are getting too big for my blouses. I push the heavy wheelchair (our rental) with one hand, push the IV pole with the other. Some poles do not move well. They really do not move well on carpet! The wheelchair must be turned - we walk around the atrium in a rounded-corner square, past pediatric ICU, where he had resided for 10 days, and the neonatal unit. We see baby X-rays on display. We always peek. Baby bodies. All sizes. Preemies. I must stop and stretch my arms midway. Shake out my wrists. Loosen my shoulders. After lifting him I must stretch my back out. Precautions. He complains that I shouldn't have to do all this. I put a piece of the blanket over the handle to protect my hands (must remember to wear my weight gloves) and remind him I am his mother. It is my job to do whatever it takes to get him well. He wants out of here. I want him to walk out. His walker sits in the corner. He can stand and lean on it with aid for a minute. He can turn over in the bed. He can pull himself up when the bed slides him down. We have a leg extension on the bed because he is tall. (Even the twin at home is too short.) He has his egg-carton foam pad under him. I have one too because my hips are killing me. They never stop hurting. But they really hurt when I lay sideways. They do this at home and here. They do this on the couch. I am worried about them. So I may add more padding to the bench here. I added padding to the couch. I will try to sleep on my back. I should anyway. He wants to be able to get to the bathroom (and out of the diaper). He cannot yet push himself up to a standing position - I put my arms around his waist tightly and lift with my legs. I hang on for dear life. The worst lift is from the chair to the bed - because the chair is lower than the bed and, therefore, it is a longer lift. Harder. Why I put him sideways on the bed and he has to drag himself around. I wear flats (tried it in heels when he was in a hurry once and won't do that again!). We test his chemistry daily. I no longer wince as I watch them draw blood directly out of his heart (central line). Every seven days they have to re-access the dual-port (double needles). Every three days they have to change the lines. All this is to keep bacteria at bay. That's what took out the other port - it got bacteria that decided it liked living on the plastic. He has compression TED hose on - to prevent clots in his legs. But we finally got rid of the space boots - actually compression leggings. Because now he moves his legs around. OT and PT come six days a week to work his legs and arms. He is moving. He no longer shakes. Or not as badly. The yawning and the slight tremor and the eyeball jitter are withdrawal symptoms. He is on Methadone wean - gets it once every other day now. All this to get off the morphine that kept him unconscious while they killed off the bacteria. Makes you think twice about taking drugs! So to this chemical stew they want to add more drugs. He needs a stimulant? Ritalin? He is allergic to Ritalin. He needs a depressant? Prozac? I use that on Little Bitch - the cat from hell - when I can catch the little beast. So far I can't reach the other psychiatrist - looking for another phone number. He evaluated my son when he was healthy. And I can't reach my brother the doctor - who is in California for a few days but the number I got out of my mother doesn't work - possibly transposed digits. I have a cancer survivor to call Monday - who will come and see my son and then we can set up other visitors. I will discuss this with him. And anyone else I can reach. The doctors are nagging me. Because he has weeks on the antibiotics (CAT scans and X-Rays look good). And then there is rehab. He is depressed? Try bored out of his damn mind! I brought MacAddict magazines. I brought my G3 laptop with Diablo II. I have other games to check on - Quake III? Ultimate Tournament? Blair Witch? He needs to check the specs on the iBook he wants for Christmas. My G3 not being fast enough!!!! Of course the iBook comes with only 64Megs of RAM so I have to add memory to it. I bring five movies at a time from Blockbuster. I brought in about 30 of our own tapes - some brand new. All our Christmas movies. I have stockings hanging. And bows. I will bring in lights. I will bring back the damn singing Bass fish. I want the singing Raindeer - "Grandma Got Run Over By A Raindeer" is a Christmas classic. I need to make him laugh. He says he is afraid that he won't get back. Oh yes he will. I am determined. And I called a realtor today. I need to try to find a house in Silicon Valley, because that's where I work and that's where the hospital is, and this is the tightest housing market on the planet but for San Francisco and NY. I need to reduce my time on the drive back and forth. I spend three hours a day on the freeway. That's about how long I sleep. I need that time to get him well. Hell of a project for the New Year. |
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